Keep Calm…and Stay Positive

As most of you know, that due to the unknown cause of my neurological condition is starting to get me down.  It is frustrating and disheartening when the doctors are unable to give you the answers that you so desperately crave.  It is simple – being undiagnosed is dejecting and can causes psychological symptoms such as depression.  All we crave is a diagnosis – a name for the cause of all that we go through on a daily basis.  A name that confirms that we are not crazy or that the symptoms are all in our head.

Due to the weakness in my legs as well as the severe dizziness and fatigue that I experience due to my undiagnosed condition, I am often unable to get out of my bed and so confined to my bed for days at a time.  Staring at the same four walls of my bedroom; a place where I spend a lot of my time anyway is not a positive experience.  It is often a painful reminder of my predicament; a predicament that I am an undiagnosed chronically ill patient.  Being confined to my bed, leads to feeling of loneliness and isolation – how many times when experiencing severe symptoms have thought you were the only person to be going through this experience?  Is that a yes I hear?  Me too.

However, Voltaire once stated “I have chosen to be happy because it is good for my health”.  A truly inspirational quote, and one that is supported by research – there is a lot of evidence that suggests that being positive makes you feel less stressed; has a positive influence on your immune system and has a huge influence on your overall well-being.

But how can we still remain positive when living with a chronic illness, which has such a negative influence on all areas of our lives?

Well, for me I have started to assemble a ‘positivity board’.  A board with cards, postcards, or letters that are both positive and in turn makes me feel more positive and happy despite being bed-bound or dealing with unpleasant.

The board is no way finished but at the moment includes a couple of cards that I found in a local art gallery that includes positive quotes, for example “Life is not measured by the number of breaths we take; but the number of moments that take our breath away” and my personal favourite “Life is not about waiting for the storm to pass but learning to dance in the rain.”  Also, on my board is a gorgeous card that was sent to me by a dear friend which has some really lovely words both outside and inside the card which I shall treasure and which brightened my day when I received it – a time when I really needed it.

I also found a couple of butterfly clips which I found in a local shop which I bought just to brighten the board and because of my love of butterflies.

Try making a board for yourself and fill it with all the things that make you happy or makes you feel a little more positive despite whatever circumstances that you often find it hard to cope with, or one which has a negative impact on your life.

Stay Calm…and make a positivity board!

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If you come across any cards that has any positive quotes or perhaps with a lovely picture of a butterfly or sunflower or anything else positive, let me know in the comments section and help fill my positivity board!

 

Thanks everyone! xx

HAWMC 2013 Day 1: What Got Me Started on The Blogging Journey…

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

The first prompt reads as follows:

Why you write – tell us a little about why you write about your health online and what got you started.

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Well, I got started writing about my health condition online on this very blog just over a year ago.  For years, before I got my definitive diagnosis, I was for years banded around the healthcare system visiting various consultants in different specialities, hearing the “it’s all in your head” diagnosis again and again.  Throughout this time, I felt scared, alone, isolated and so on.  The loneliness and isolation I felt was extreme – I felt as though I was the only one that was going through the pain of misdiagnosis and all of the symptoms that I have had for so long they were like old friends.

And so after my diagnosis, and joining various support groups; I felt it was time to start a blog – a place in which I can share my story and let other know that they are not alone.  Perhaps also hope – hope that one day they will too find that diagnosis that they have long been searching for.  It was actually a close friend, someone who also write her own fantastic blog, whom I met in a support group in which I am a member of who first suggested that I start the blog; encouraging me to share my story with others.  I had already regularly wrote in a journal, and felt a public blog was a natural progression for my writing as well as raising the profile for neurological conditions, which still seems to be under-discussed and not really publicised the same way as other conditions.

My condition is also unusual.  It is so unusual, that I have yet to meet anyone who has been diagnosed with the same condition, and so by writing the blog, I can maybe one day meet others with the same diagnosis.  However, this is not so important as I have not learnt that it is not the diagnosis that connects us but instead the experience of living with chronic illness.  There are many facets within chronic illness that are a part of the majority of chronic conditions such as fatigue, depression, pain and so on.

Apart from keeping the blog up to date, I also regularly take part in the ‘Health Activist’ Chat (#HAChat) on Twitter, in which myself and other health activists discuss various topics relating to healthcare and health activism.  I have also written articles for the ‘Invisible Illness Awareness Week‘ and a forum called ‘Disability Sanctuary‘.  In addition, the blog has enabled me to initiate contact with others with brain lesions, a couple of whom also has lesions on their brain stem like me, and this would just not be possible without the blog.

This year sees me getting involved with the ‘Health Activist Writer’s Month Challenge’ for the second year.  I get involved not only for the challenge for writing for an entire month continuously, but in my opinion the original prompts also challenge me as a writer and blogger – making you think deeply about the conditions in which we live with and writing them in a way in which we wouldn’t normally discuss them.  In addition, the HAWMC also allows us all the opportunity to connect with other health bloggers and read more about their journeys with chronic illness.  I have had the wonderful opportunity to meet many other health activists and bloggers through WEGO Health and the HAWMC.

And there you have it – how I started with how I started blogging about my health condition!

Living with illness…is like using a revolving door…

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Hello to all readers new and old

Sorry that I have not been able to write a post sooner but life has been pretty hectic!  Lately, fatigue has been a constant feature in my life, so much so, that the hours that I have with my personal assistant has been extended over two days instead of using all the designated hours in the one day.  Added to that, is a new group that I have recently joined as well possibly being involved with setting up a brand new group for young people with disabilities in my local area.

And then of course, has been my health.  As most of you reading this, also living with chronic illness, will know, that life can be like a revolving door – symptoms can be stable and manageable and then out of the blue, there is a deterioration of said symptoms and then find yourself navigating said revolving doors through to yet more doctors visits, hospital visits, more tests and so on.  New symptoms appear, an example being the recent introduction of vision loss can be worrisome and can also question whether doctors have given the correct diagnosis, or whether it is possible that your condition is deteriorating.  New symptoms are like being handed pieces of an uncompleted jigsaw puzzle and then having to cipher where these pieces fit in the bigger picture of your condition.

And after the initial consultation with your G.P can often, particularly if the new symptoms are unusual or worrisome, result in (again!) being referred to the specialty that is connected with the particular health condition.  For me, not only have I referred back to Neurology, but am also awaiting for an appointment to seen an ophthalmologist.  Waiting for hospital appointments, not only can be long and tiresome, but also leaves you on tenterhooks; especially when the mail arrives each day, wondering whether today is the day in which that all important appointment letter will arrive!

 

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That only then leaves the preparation for the actual appointment!  If I can offer any advice to any ‘spoonies’ out there, it would be this:

  • Make sure that you prepare for the appointment beforehand – if like, me you often find yourself remembering various information that you wished to discuss with your doctor AFTER the actual appointment, then it can be a really good idea to write a list of questions and points that you wish to discuss before your appointment.
  • You might wish to write down all the symptoms that you have experienced, I know from personal experience that I often forget to mention some of the symptoms that I have been experiencing
  • It can be quite unnerving attending hospitals; the often produce anxiety and fear, and often will forget some of the information that the doctor has given you, so it may be a good idea to ask a friend or family member to attend the appointment
  • Take a book, or something else to distract yourself from the anxiety, or even just to occupy the long wait in the waiting room

Any other tips that anyone has regarding attending hospital appointments?  Comment below and share them!!

 

A Look Back at 2012…

New year 2013

Hello to you all, I hope your Christmas and New Year went well, and you all managed to enjoy yourselves.  Now 2013 is upon us, I thought it would be a good idea to take a look at last year…

Well, firstly 2012 saw the deterioration in my condition and the symptoms which affect me: the dizziness became much more intense as well as becoming constant.  As well as this, the weakness in my legs became worse, and thus saw me needing to start using a wheelchair, as the weakness left me with an inability to stand for shorter periods of time.

However, although last year, saw a deterioration in my symptoms there was still a lot to be thankful, including the following:

  • The creation of the blog; gaining a lot of new friends and contacts within the world of chronic illness 
  • Taking part in the wonderful 12-12-12 Project hosted by the wonderful Marissa over at abledis.com 
  • Having two articles published online; one for ‘Invisible Illness Week

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  • Joining the wonderful group ‘Life 4 Living’ in which I became the group’s secretary; giving me a sense of pride and purpose 
  • Can’t forget the two nominations I received for the blog as part of the WEGO Health Activist Awards!!  Thank you for whomever nominated me and the blog
  • Receiving help from Social Services to help me manage the condition, as well as being able to employ a personal assistant to help me get out of the house more!

I just wanted the opportunity to show people that although many of us, battle everyday with chronic illness, it does not mean that our lives need to be full of negativity and despair, but instead there are many positives that can be as a result of said illness.  I recently bought myself a gorgeous print from a local artist, which sums this up beautifully:

 

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The quote says: “Just when the caterpillar thought the world was over…it became a butterfly”

NHBPM Day Twenty-Four: Being there for someone with a Chronic Illness…

Welcome everyone to Day 24 of the WEGO Health annual ‘National Health Blog Post Month’.  Today, instead of writing one of the prompts provided, I would instead write a follow-up piece to the Day 18 Post ‘How should I care for someone with your condition?  Well you should…

What if your friend suffers with a chronic illness?  What type of things could be done to help them?  For friends, it can be harder for them to fully understand the condition on which someone lives with, especially as the friend does not see them everyday, and therefore may not see the full extent of how the condition affects their friend.

Living with a chronic illness can be challenging and frustrating for everyone involved.  The symptoms often fluctuate, for me they can fluctuate frequently; symptoms which can change instantly.  Symptoms can also be unpredictable – never knowing which days are going to be bad and which days will be good; often patients do not know how they will feel one minute to the next.  This can make plans for going out incredibly difficult and challenging.

With a condition like mine, it can also be challenging to know how well I can function from one day to the next; or one minute to the next.  One minute my mobility can be relatively okay, using my crutch and then  the next I can be on the floor after my legs have given way.  This obviously can make incredibly challenging to go out, and often plans need to be made to cover all eventualities.

So, how can you help a friend who suffers with a chronic illness?

Well for starters, to be a friend of someone with a chronic illness, in my opinion you should be non-judgemental and understanding.  It can help if the person educates themselves on their friend’s condition.  To learn how the condition can fluctuate and change, and all of the symptoms which can come with the condition.  With my condition, it can affect mobility, vision, cognition, and also constant dizziness and episodes of vertigo.

It can also be helpful for the friend to learn the changing needs of the patient and never make assumptions of their capabilities of the person.  Often, the person may look really good, but the reality may be the complete the opposite.  So, always, ask the person what mobility aids that they think they may need for the trip out somewhere and also to ask them if there is anything that you can do to help them.

The biggest think that I feel that you can do to help your friend whom suffers with a chronic illness is to take them out on outings for a few hours.  The biggest challenge that I often face is socialising.  Due to my condition, I am unable to drive, and due to the severity of the symptoms and the problems with my mobility, I can not go out alone.  I am unable to cope with public transportation such as buses, as it requires a lot of standing around waiting for its arrival, which as my legs are weak, I just cannot do.  These limitations have severely affected my friendships.

I could invite friends to visit me at my home; but often feels that I am inconveniencing them due to the travelling that they would have to do to reach my house.   Also, when I am having company; I like to make sure the house is clean and tidy for them, so all the preparation that I would have to do, really would deplete the number of spoons for that day, and by the time that they arrive I may feel so tired that I am really not up to socialising or playing hostess to the guest.

When I am invited to spend time with friends ( although I really only have one friend who is able to physically take me out) it really cheers me up,; makes me so happy to see someone I haven’t been able to spend the time with, that I would like.  It is really useful for the patient when being invited out within the wider world for a few hours; for me, a lot of my time is spent inside the house, so anytime that I do get to go out for a few hours is special.

If the person has a chronic illness has, like myself have difficulties with their mobility, then for the friend it is important to consider transportation – if a group of friends, for example, is meeting for a meal, then it is important to include the person with the chronic illness, and to check whether they have means of getting to the venue, and if not then help them with the planning for transportation that will be suitable for the person.  If you are able to drive, then volunteer to pick them up and drop them at home afterwards.

When friends go to these efforts to be inclusive and help us with chronic illnesses, it can make us feel valued as a friend and just makes us feel special, and are always so appreciative of any help that friends offer.  Life with a chronic illness can often be very lonely and isolating, so knowing that friends are there for us, and are willing to go the extra mile to help us with things like going out, and helping with transportation can be so uplifting – and reminds us that we are not alone, and that although it may  not always feel like, we have friends out there who care :)

Although, friends should be made aware, that there is always that possibility that we may need to cancel plans at the very last-minute due to the unpredictable nature of chronic illnesses.  This can be very frustrating, and know how upsetting it can be when plans are cancelled.  It is also extremely disappointing for the patient too as when plans are made, we often really look forward to go out and have fun, and to then being unable to function and need to stay at home can be demoralising as we spend so much of our time at home anyway!  So, friend always be understanding when plans have to be cancelled and to never blame the person – it’s not their fault but their condition!  If blame is directed towards the chronically ill person that it can often make us feel even worse.

Another big tip that I can give is to keep in regular touch with the person.  Send a message, whether it be a text, message via social media.  Just to let them know that you are there for them and more importantly that you care.  Often, I find myself totally alone, and the loneliness feels even more evident, so it;s really lovely when I do receive messages.  It makes me feel connected to the world and to others even though at the time it may not feel like it.

So, those would be my tops tips for friends of the chronically ill?  Are there any tips that I have missed out?  Let me know….

NHBPM Day Twenty-Two: Changes…

It’s Day 22 of ‘National Health Blog Post Month’.  One of today’s prompt asks us to write about we are thankful for – as I have already done this in a recent post (Day 5: Giving Thanks!) I have decided to use the second prompt.  The second prompt asks us to write about change.

Well, my life at the moment are going through some changes.  The biggest change is that I am going out more, and to new places, thanks to my new personal assistant whom I was able to employ thanks to a grant provided by the local council through a scheme called ‘Direct Payments.’  When I am out with my Personal Assistant, I am not just visiting places that I need to go – but am also starting to visit new places, or places that I have not  been able to access for a long time.  And for the first time, I do not even have to rely on my parents to buy essentials for me, such as shampoos and conditioners, shower gel for me anymore – I can get them myself and even decide on the brand for myself!

                 

The house – outside and inside has also seen some changes this week.  A few weeks ago, I had a visit from a Community Occupational Therapist, to have a chat with me and to look around the house, and whether any adaptations could be recommended to make my life easier moving around the house, and of course, to prevent accidents.  For example, outside my house there are steps leading to the front door, steps which had no rails to hold onto – this for me, causes a real problem, as when I need to circumnavigate steps or stairs of any kind, I need something which I can hold onto, to prevent stumbles and falls, especially when the visual disturbances presents itself as I cannot always clearly see the steps to safely walk down.  Before now, i used to walk down a little grass banking at the side of the house to get to Dad’s car – the Community Occupational Therapist saw a potential danger with doing that – as if when in the case of heavy downfall (which happens a lot in Wales!) the grass will get slippery, and leads to the increase risk for a fall.  So, she referred me for some adaptations to be done to the house – such as external rails for the outside steps, an internal rail for the stairs (we already have one, but the OT thought a second one on the opposite wall would be beneficial) , and a drop-down rail for the bathroom.

 

              

These changes have now all been installed and ready for action – and are already been incredibly handy for me!

Another change that has happened for me lately is the move from using a crutch all the time when I am out and about to using a manual wheelchair.  The reason for this is the worsening of the weakness in the legs, which for me leaves me unable to stand or walk for long periods – obviously when I am with my Personal Assistant, this requires me to be out for pretty much the entire day (around 7 hours), and so need a wheelchair to be able to manage this.

This doesn’t come without its problems however.  One of my main symptoms, as you all know by now is the constant dizziness.  The dizziness, can still be really bad, even when sitting down; a symptom which really won’t go away.  And so the dizziness, is causing a real problem when I am using the wheelchair – being pushed and seeing everything whizz past, doesn’t do anything to help the constant movement that I already live with – and almost makes me feel really unsafe sitting in the chair.  Using the wheelchair going into shops is also a problem, as it causes the need to look up to see items – and tilting my head back to look up is one of my triggers – and can set the dizziness to high!!

 

 

 

I would love to hear others’ stories about being new to using a wheelchair and perhaps some tips to help me adjust to the new experience of using a wheelchair.  Any tips would be greatly appreciated!!

NHBPM Day Twenty-One: Mental Health – Why the Stigma?

Welcome to another post of the WEGO Health ‘National Health Blog Post Month’!!  It’s Day 21 so, the end is nearly nigh!  I hope you are all enjoying the posts so far.  Ready for the next one?

Today, I have chosen the prompt asking to write about mental health.

As you may now already know, I have a BSC in Psychology, and currently volunteer for a local Mental Health Charity, so this topic and area is of importance to me.  I suppose, I decided to study Psychology at University and later to volunteer for a mental charity because of my own battles with mental health difficulties – that of depression and anxiety.  But what I have found with studying Psychology, volunteering and living with mental health conditions myself is still the stigma attached with mental illness.

We have all been told the statistics – that 1 in 4 people will at some point suffer with a mental health conditions themselves.  The statistic for the prevalence of dandruff, to compare is 1 in 5 people!!  Fancy that, mental illness is more common than dandruff!!  Yet, having dandruff doesn’t have the same negative stigma attached to it!!

In my 3rd year of University, I decided to study the stigma of mental health for my dissertation.  The results were shocking, especially considering that the population that took part in my study were well-educated students; a generation that were supposed to be open-minded and less judgemental.  However, after reading a statement regarding a hypothetical person with paranoid schizophrenia, this all changed.  They deemed the person to be dangerous, less inclined to give the person a job and less inclined to give the person a place to live.

Schizophrenia although producing symptoms such as paranoia, voices inside their head, and often delusions, they are seldom a danger to others – in fact, after reading several pieces of research for my dissertation, a person with schizophrenia is more likely to be the victim of a violent attack than the perpetrator.  So why the ever-increasing negative attitudes towards mental illness?

Well, it could be said that the majority of the blame could be placed at the media’s door.  Although, it is said violent crimes carried out by patients exhibiting mental illness is said to be rare, there are however endless reports in the media, of patients, among them schizophrenic’s, being the perpetrators of such attacks – often resulting in the loss of life of members of the community.  Although, these instances are rare, when they do occur however, they are headline news; published on the front papers with sensationalist headlines – making the connection of their mental illness and the crime.

So, although these crimes are rare, when they do occur and become headline news, they stick in our mind, therefore, making us think that they occur much more regularly than they actually do.  This is known as the availability heuristic.

Perhaps, these false beliefs are also due to the lack of knowledge of such disorders – people simply, believe what they read or hear, without gaining all the facts.  Fear born out of ignorance and misinformation, perhaps?  Or perhaps, the mentally ill are so heavily stigmatised as they deviate from the norm, and as history has shown society has often marginalised people who are different from the society’s view as being ‘normal.’

So, how as we as health activists, and society as a whole start to destigmatise mental illness?  Should media outlets encourage stories of mental illness in a positive way – show that there is hope for people who have been unwell from mental illness? To encourage celebrities and other well-known faces who has been inflicted with such illnesses, so that there is a face to mental illness; to make it less fearful and show that the mentally ill are not so different to the rest of us after all!

I have had the pleasure to meet, through my work as a volunteer to meet many wonderful people who have been touched with a mental illness, from depression to schizophrenia, and can say that they have been the most friendly and kind people I have come across.

So why still the stigma surrounding mental illness?

NHBPM Day Twenty: Regrets? I’ve had a few…

 

Today, is all about the moments that as health activists or as patients we regret.  The moments that looking back on, we wished we had done things differently.

Mine happened during my first year at University.  Around this time the dizziness was becoming increasingly worse, and was also experiencing at the time periods where I was fainting and losing consciousness for a few minutes.  This obviously caused some alarm, not only for myself but also for my parents.  I found myself on a couple of occasions I fainted whilst out walking the dog; waking to find Honey looming over me, licking my face, trying to make me come to!

 

 

After a couple of these episodes, my parents and I made an appointment with the Doctor; he checked my blood pressure, which has always been low, but he wasn’t overly concerned, and didn’t think it was the cause of these blackouts.  He then referred me to see a consultant at the local hospital, but warned me that it would be a wait.  He suggested that if I experienced another episode then I should visit the ‘Accident and Emergency’ department of the local hospital, which may fasten the process.  A couple of weeks later, whilst out with a meal with Mum, I fainted whilst in the bathroom, and so she phoned my Dad, who then came to pick us up and drove us to the hospital.

It wasn’t long after that, I received a hospital appointment with a consultant.  It was in what they called the ‘Day Hospital;, an outpatient department with beds, where if needed you would need to stay there all day to go through endless tests.  Thankfully, I wasn’t there all day, but he examined me throughly, and noticed a couple of abnormalities with my legs, exaggerated reflexes, I think was  the concern.  It was then he referred me for a CAT scan of my brain and spinal cord, as he suspected that it may be caused by some sort of neurological disorder.  After the appointment, I went home, and like most people I googled about the procedure.  It really didn’t seem like such a big deal, but at that time the dizziness was so bad – and was quite bad when lying down staring up at a ceiling, which obviously happens during a CAT scan.

A CT scan

 

Anyway, a few weeks later the appointment came through – my Mum was working so it was Dad who accompanied me.  I admit, that all hospital tests and procedures scare me a little, and was particularly worried about this one, especially as my Dad wouldn’t be able to come with me as CAT scans uses radiation, and I did work myself up because of my anxieties.

I worked myself up so much that I had a panic attack after lying on this small, narrow bed that would be used during the scan, I just felt incredibly dizzy, and didn’t like how open the room was; it felt like I was going to fall of the bed or something!  I just couldn’t go through with it, and so the test was cancelled and I went home.  The tension in the car on the way back home was horrific; Dad was so angry, especially as the trip was wasted.

Looking back on it, that was my one big health moment that I regret.  Not only did I waste my Dad’s time but also the hospital’s time – that cancelled appointment could have been used for someone else that needed it; wasted resource that would surely cost the NHS.  But I also regret it because there was that possibility, that they could have found what was wrong with me a lot sooner – I wouldn’t be diagnosed for at least another four years after that.  Maybe I couldn’t go through with it as at the time I was scared about what they would find; maybe I was not emotionally ready to find out what was wrong with me.  Although, perhaps if they had found out the cause sooner, especially the problem with my legs, then I could have entered physiotherapy a lot sooner, and perhaps my legs would not be as bad as they are now.  But now we will never know; there will always be that ‘what if’…

WEGO Health Advocating for Another Carnival: Once Upon a Time…

Welcome again to another WEGO Health Advocating for Another Carnival, it’s the fifth day and the prompt is as follows:

It’s storytelling day! Write a story about yourself, your community as though you are a children’s book author.  Be sure to include a beginning, middle, and end.  Extra points for illustrations! 

I love this prompt! It’s really different and am sure it is a style of writing us health activists haven’t tried before.  It seems to be a lot harder than it sounds but here it goes…

Once upon a time in a large kingdom called Wales there lived a young princess named Rhiann.  Rhiann was a very lonely princess, nobody understood her as she had an invisible illness meaning she was unwell but nobody could see what was wrong.  This was due to a problem with her brain, a problem no-one else in the kingdom suffered from.

As no other person could see why the princess was so unwell, many of the servants and commoners were suspicious of her assuming that she was inventing the illness to gain attention.  This made the princess so very lonely, and isolated, her only friend being her trusted dog named Honey.

One day, along with Honey, Rhiann went for a walk in the forest where she came upon a little cottage.  The curiosity got the better of the young princess and she stepped inside, “Hello?” she cried out.  Then a mysterious looking witch came into the light “Yes, princess?” she replied.  “Hello, my name’s Rhiann and I just happened to come across the cottage, I’m awfully lonely and was hoping to find a friend.”

The old witch stared at her in wonder, “Yes, my dear Princess, I have heard all about your troubles, and I have something here which will solve all of your problems”.  The old woman gave her a mysterious looking box, which looked very much like a large book. Rhiann opened this book, and instead found a screen with a board with keys, one featuring each letter of the alphabet, as well as numbers and other symbols.

“Thank you so much” the princess cried out, running out of the cottage, Honey behind her, determined to get back to the castle as soon as possible to try out the mysterious object.  As she arrived, Rhiann headed straight to her chambers, settling the mysterious object on her bed.  After studying it for several minutes, the princess found an on button – and she was soon transported to other worlds on the screen.  This thing she was given, according to a note that was attached to this object by the witch, was called a laptop, in which she was able to explore the ‘internet’ – a portal which could take the princess wherever she wanted to go.  The witch also gave instructions on how to use the internet as well as giving her addresses in which she could go on to make friends.

The princess desperately typed and typed these addresses on the laptop and whoosh, she found everything she could wish for.  She found a place were there were a lot of different people with a variety of different medical conditions.  She chatted for hours and hours with these people, talking about a lot of different things.  And she found that these strangers, accepted her for exactly who she was with no judgement.

And as the months and years passed all of these new people became her good friends and the princess was never lonely again.

THE END

So, what do you think of my attempts at writing as if I were a children’s book author?  I wrote this as if I were the main character – and the loneliness and isolation ‘the princess’ felt was the same feelings that I have had for many years, the feeling that you are not accepted.  That was until, like the character in my story I became active on the internet, especially within the health community as since then I have had the pleasure of meeting a lot of people who have accepted me for exactly the person I am, and I am blessed to call them my friends.  This is dedicated to all of them.

A problem shared…

Welcome to another blog post from ‘My Brain Lesion and Me’!

This month, the folks at WEGO Health are concentrating on ‘Health Activism in Real Life’.  So, instead of the focus on being on online support groups or on those like me who blog regarding a particular health condition or cause the focus is instead on those organisations or even on specific people who use the more face-to-face approach to health activism.  This could include any of the following:

  • Non-Profit Organisations, i.e. charitable organisations
  • Support Groups
  • Meet-Ups with fellow patients
  • Awareness Events
  • Conferences focusing on health conditions or causes

So, I thought that I would share my thoughts and views on this topic and its role in providing support to those who are dealing with chronic illness or disabilities.  Now, I have found great comfort in online support regarding my own health condition and subsequent disability – the internet has made it possible for me to forge friendships and a strong support system with people who may not have the exact same condition as me, but who are nevertheless exhibiting similar symptoms that I face every day.  Without the internet, it would not have been possible to speak out about my condition, increasing the awareness of my condition and what it is like to live with through the 12-12-12 Project over at Abledis.com.

 

Without the technological advances that are available at our fingertips – the computer, smartphone, tablets and so forth I am afraid that I would probably live a very lonely existence indeed, stuck in the house constantly with only my parents and the dog for company.  So, the internet and the support networks available are such a godsend for thousands of people out there who are housebound or who are unable to get out as often due to their health condition, giving the ability to be able to connect with others and not feel so lonely.

 

However, this isn’t to say that there is no place for the offline, there are many non-profit organisations out there that are doing a fantastic job in providing and support for patients or service users, advocating them in times of problems and providing an ear for them when they are struggling.  I myself volunteer for a great non-profit organisation providing support for those living with mental health difficulties, called Mind and the support they provide for people and the others services that they provide.  Not only that but it provides a safe, comfortable environment for people to make new friends and talk about their problems and experiences without judgement or criticism.

 

There are times when I just wish that there was a support group out there for people like me, experiencing a similar condition to myself where I can get support, advice and make connections with others – but there just doesn’t seem that there are any organisations or non-profit charities that my particular health condition and situation really ‘fit’ into.  Even searching on the internet hasn’t helped!!  But have started going to a new group, although wouldn’t class it as a support group more of a group for ‘meeting-up’, learning about different topics and hopefully going on trips around the local area.  It as been great for me – enables me to get out of the house for a few hours (something I can’t do with online groups!) and chat and meet a wide range of different people, most of whom living with a chronic illness or disability.

 

So, I am starting to get the best of both worlds – using the online and offline resources for health activism and both definitely have their advantages and disadvantages but still both are equally valuable in providing patients, carers and other people involved within the health community to share personal stories, gain knowledge, connect with others…

So, which of these do you prefer – using the online for health resources and enjoying the privacy and anonymity it provides or do you prefer the more personal touch and connect with others face-to-face, enjoy getting to know others on more of a personal level?  Would love to hear your views on this topic!!….